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4.24.2009

Wednesday night Jared and I got to go to parents night at Claire's school. This was our first time at this sort of event and it felt a little strange. We are trying to convince ourselves that we still are not grown ups, but parents night sure made us question that. Since Claire goes to a school for autism the event was set up with lots of resources to help families who are living with a child with autism. Clarie started into the system at a pretty young age, so we were already familiar with many of the things that are out there to help. Jared and I had a good little chuckle when the guy from the Play Project presented. It is a really great program that is intended to use floor time to help the kids connect and socialize. One thing Claire definitely does not need help with is socializing, so we didn't bother that rep. We checked in with teacher Katie who agreed with us that socialization is not Claire's current weak area. She then informed us that earlier in the day, she had one boy on each side of her holding her hand. The exact word that the teacher used to describe little miss Claire was "The Queen Bee". Apparently, Claire enjoys being the center of attention in the group, as she is the only girl, it looks like she gets that role a lot at school. Lord help us, she needs a little competition, and it is coming, soon. Here is a picture from Eater, you can see that she gets plenty of love and attention from her daddy. If you would like to see more of the pictures from Easter, here is a link to my flick page.

4.18.2009

It was a typical Saturday. We tried to convince Claire to sleep in, she didn't. I went to the chiropractor and Jared tried to get stuff done around the place. Exciting stuff, like cleaning the kitchen, folding laundry and assembling the various things that I decided we needed during the week. At 4pm we had the behaviorist over to go over the plan. I knew that we needed to have a serious look at making some changes when her first suggestion for communication involved teaching Claire sign language. I had a huge opportunity to educate yet another person on what Rett Syndrome is and is not. Of coarse this took longer than we had expected. We lost our window to go to the Monterrey Bay Aquarium as planned and Claire was not happy with that. We had discussed petting the starfish for the whole day. Plan B, we go to the boardwalk. After some smooth talking, I calmed her down and we settled on going to the aquarium tomorrow, the boardwalk immediately. Apparently, everyone in San Jose had the same thought. Traffic was worse than we expected, but thanks to rock music compliments of Uncle Zach, she was happy to sit and move inches at a time trhough downtown. After Jared nearly had a break down finding a parking spot and we pushed our way through the crowd, we got to the carousel. After waiting in line, they went for the first ride and had fun. Then we took our cherry icee and soft pretzles down to the beach and had a little picnic. We couldn't believe that we were having to bundle her up at the beach, but we did, it was cold. In the time that we sat in traffic and waded through people Jared swears it dropped 15 degrees. None the less, we sat on our towel, wiggled our toes in the sand and talked about God's beautiful big ocean. It was getting late and it was time for one more ride on the carousel and to get home for dinner. We timed it perfectly, there was hardly a wait. Jared and Claire found a big brown horse to climb on that was close to where I was sitting. After all that walking in the sand, I was so content to be sitting. I was processing the day. Thinking about how I need to help the behaviorist to understand Claire. What do I need to be communicating to her teacher, the usual heavy stuff that I try so hard to get out of my head, often with little success. Then the carousel started and it was magical. She lit up. It was such an honor to see her in a moment of such pure bliss. There was no biting or hand wringing, no shakyness, she just glowed. Again, I find myself learning so much from her. Here is this child who is becoming painfully aware of her differences with every day. I can no longer discuss her "disability" in front of her as it upsets her. But in this moment, none of it mattered. She was sitting on the horse with her daddy, like many of the other children, and she glowed. It was so great that I even stood up to take a picture so that I could remember the moment and share it with all of you. I hope that wherever it is, that you get a moment of pure bliss this weekend like we did.

4.10.2009

Again, I must begin with apologies. I have been a bad blogger. It has been over a month since my last post. The best excuse that I have to offer is that Disneyland got into our system and we have been busy enjoying life. I have been really trying to spend as little time as possible at the computer, there are just so many better things to do. Like take walks along the cliffs, get iced tea at The Verve, take a nap on the couch, giggle with Claire, bowl with Jared on the Wii, the list goes on, but I think you see where I am going with this. I am not trying to brag about my charmed life, I assure you that we have bumps, lots of them. Lately I have had the ability to really thank God for everything in my life as a blessing. Tonight I found myself saying to Claire, "How is it that you are so happy, shouldn't that be a crime." Made me think. I really do believe that God wants us to abundantly enjoy life, and with Claire leading us, we are. It has been really amazing to see her continue to come into her own in the last few weeks. We are finally getting things with her schools ironed out and we have been able to prioritize. The amazing thing about Claire is that we could work on everything. She tries so hard and if we take the time to teach her, she is a little sponge. The problem is that she is three and there are twenty four hours in a day. Recently we have moved fun up on the scale. I am so glad we did. It is amazing how less tiring it all seems, when you stop to have fun. I had a birthday in March and I got the Fit for our Wii. Everyone should know that watching my husband and neighbor hoola hoop and attempt yoga is a wonderful source of fun.For the more humbling portion of my life, it started with a trip to Lucile Packard Children's Hospital. We had a 9 am appointment with genetics. By the grace of God I had left early and we weren't in a hurry. Since I was not in a hurry, when traffic came to a halt on the freeway, I stayed in the slowest lane. Unfortunately there was another driver who was in a hurry, and she almost missed me. She did manage to rip the wheel off my truck, push me into another car and spin in front of us and get hit again. Claire and I were fine, after many long hours of watching, it was determined that Chloe also seems to be fine. For being fine, I am amazed at how sore I got. It really forced me to rely on others to make it through the week. I am grateful that we have Jen, Kim and Jess who help with Claire and around our home. It has been a humbling experience having to get so much help, but it has been good. You don't realize how much you take for granted being able to stand up and get a glass of water whenever you feel like it. So I have learned lots of lessons from the "accident". First, don't be in a hurry, you are more likely to plow into somebody and get hurt. Second, it is alright to take help, you never know who will end up blessed by it.So that is the update on what we have been up to, having fun and recovering. We are planning on welcoming Chloe into the world on May4th, unless she has other plans and we are very excited (understatement ofthe year). Claire can't wait to be a big sister and Jared is dying to get to hold her. I just want to watch her sleep. Since learning about genetics through Claire, the concept that anybody is born really trips me out. The other thing that we are currently dealing with is the recent diagnosis of Jared's mother. She has not been well and was just told that she has plasma cell leukemia. Yet another oppertunity for God to show us who He is and for us to rely on Him throughout every second of the day. Please keep her and the family and doctors in your prayers. For those of you that are reading this in AZ, it does mean that we will be back sometime in May, so watch out for us. For those of you that knew me when I did the Nike half marathon for the Leukemia & Lymphoma Society, watch out for that, I plan to train with the team again, only in Linda's honor this time. Here is one last picture of Claire, just because she is so darn cute. I hope that you all have an amazing Easter and celebrate all of the amazing gifts that were given to us through this life, death and resurrection.

About Me

Most of my time is spent getting to know our little gift Chloe and working to enable her big sister Claire. I love motorcycle rides with my husband and walks along the cliffs. I can't believe that God has given me so much, I am just trying to soak it all in.

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As defined by Webster:

or·gan·ic

4 a: forming an integral element of a whole :fundamentalorganic parts of the action — Francis Fergusson>b: having systematic coordination of parts :organizedorganic whole>c: having the characteristics of an organism: developing in the manner of a living plant or animal organic>

1ex·pe·ri·ence

3 a: the conscious events that make up an individual lifeb: the events that make up the conscious past of a community or nation or humankind generally4: something personally encountered, undergone, or lived through5: the act or process of directly perceiving events or reality